and Cody

[Guest guest]

and his twin Cody were 9 1/2 wks early was the biggest

between both of them. When they were 4 months onld was admitted

for seizures. it took the hospital 3 or the 4 wks he was in there to

find out what was wrong and what he had. He was on the Infectious

Disease floor at Childrens Hospital..He was finally dianosed with

Herpes Encephalitius Simplex 1 (not the genital herpes) He ha a cold

sore on his bottom lip and the infection from that sore went

dirtectly to his brain which caused him to have seizures and just

recently found out storkes as well. I lost 3 different times while he

was in there. He was finally released to go home he was sent home on

Tegrital I thought he was doing very well until he started having

more seizures which in return I was told to get him to the ER and get

him checked. Well everytime I did this the Neurologist would increase

the medicine. got tot he point that all he did was eat and sleep

never up or awake long enough to do anything. So in return I weined

him off the medication. and he has done great since then until Feb

8,'05 His Neurologist said he would be confined to a wheel chair.and

he isn't. He has several diffent things that he has ADHD, Apraxie,

the Herpes Encephalitus Simplex 1,Arnold Chari 1 malformation, and he

has had surgery for VPI (velopharyngeal insufficiency). had

strep on Feb 8 and then he had a fever that went to 102.7 since all

this happened in Feb. he is now taking Prevacid for his severe

reflux, Topamax 150 mg's every 12 hrs, Trileptal as of lastnight 525

mg's,Concerta 54 mg's daily Clonidine .1 mg at night All this equals

out to 11 1/2 pills in the am and 10 1/2 in the pm..He just went for

an MRI this past Wednesday..But when he has a seizure his left hand

the thumb,index and middle finger would curl under and stay that way

from 3 1/2 minutes to as long as 3 1/2 hrs ..The Dr's now think that

when he has a seizure it could be causeing him to have spasm's but

they are not for sure. He doesn't pass out his do not roll back he

does no sort of twitcing or jerking..The thing I find odd is that the

last 3 times he has had one of these episodes it has happened in his

right hand only NOT the left and his left is the weakest do to when

he was an infant..I am so worried something else is going on ..I try

to tell these Dr.s but they really haven't done anything except give

him more and more medicine and no kind of tests until this past

wednesday..Other then all of this is very good in school and

gets good grades all B's this yr him and his brother are going into

6th grade...Cody was born with a club foot and has had 2

surgeries..They both are doing very well..And I am proud of them!!

Theresa